Among racial and ethnic minorities in the United States, African Americans and Latino Americans face the most disproportionate risk levels for Alzheimer’s disease and dementia (AD). Yet they are underrepresented in patient-centered outcomes research/comparative effectiveness research (PCOR/CER) and all other aspects of AD research, and few, if any, coordinated efforts exist to engage minority patients, caregivers, and stakeholder groups in shaping research priorities or strategies. Given limited connections among minority patients, caregivers, and other AD research stakeholders, building relationships and an infrastructure to sustain them will help advance PCOR in AD for minority populations by fostering collaboration, knowledge sharing, economies of scale, and other outcomes. In this two-year project, UsAgainstAlzheimer’s will hold a summit and two webinars/teleconferences each year to engage minority patients, caregivers, and stakeholders in shaping patient-driven research priorities and advancing PCOR/CER for AD. The events will help build the first community-driven network of patients, caregivers, and other stakeholders for collaboration around PCOR/CER in AD among communities of color. The project team will identify patient/caregiver priorities in AD research via a survey administered through our networks and partners.
Anticipated outcomes include: shared understanding of PCOR opportunities among increased range of stakeholders; identification of minority community-identified research priorities to advance PCOR/CER on AD in minority communities (which may inform other disease areas); increased relationships among stakeholders, which will foster sharing of best practices and collaboration; increased minority participation in PCOR/CER around AD and other health conditions.
Outputs include: teleconferences/webinars (four total), with live and recorded versions available online; two stakeholder summits and summary reports from each; National AD Stakeholder Network for PCOR/CER online directory to help researchers, clinicians, and community-based groups find others working to boost minority patient/caregiver engagement in PCOR; and patient/caregiver survey on PCOR/CER priorities via our networks/partners and report of findings.
The project team will use a community participatory approach to engage patients and stakeholders: African-American and Latino AD patients and family caregivers; academic and industry AD researchers; community-based groups focused on AD and minority health; faith leaders/organizations; and health policy leaders. Their input will inform planning, implementation, and evaluation: on the project advisory team; as speakers and active participants in teleconferences, webinars; as planners, speakers, attendees at both summits; in developing, expanding, and disseminating online directory; as respondents to the research priorities survey; and as recipients of survey findings and summit reports, recorded webinars/teleconferences, and the national stakeholder direction developed in this project.
In addition to UsAgainstAlzheimer’s patient/stakeholder networks (African American, Latino, Activists, Clergy, Researchers, Women, Galaxy, A-List 1000, Facebook), collaborators will include research partners (North Carolina A&T State University, Mayo Clinic, Global Alzheimer’s Platform Foundation, UT Southwestern, Eli Lilly, Merck), minority-serving organizations (Latino Alzheimer’s & Memory Disorders Alliance, League of United Latin American Citizens, National Black Nurses Association), and AD-focused coalitions (Leaders Engaged on Alzheimer’s Disease, Global CEO Initiative on Alzheimer’s Disease).